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Monday, August 6, 2012

The Heroes

On my blog I've written many, well, hundreds upon hundreds of blog posts about my life and my experiences. I've given many quotes such as, "Understanding is the foundation for hope" and, "If one sees who they aren't they will forget who they are." I've done social experiments (see these blog posts) and have become nothing short of an open book. Some might say that this is a sure sign of a success story. Perhaps that it is, but I'd be nowhere without the true heroes.

In interviews I'm always asked how I'm doing what I'm doing and, sadly, I don't think I've given the perfect answer and quite possibly the answer is too long because it isn't that I, exactly, did everything by myself. As I think of other people on the spectrum that have success stories they too didn't just make it without effort as always there was a supporting cast of heroes. So it is to you, the real heroes of the autism spectrum, that this blog post is written for.

To the parents: I'm not a parent, but I would have to think that everything changes when the doctor breaks the news of, "you child is on the autism spectrum." That moment, that singular moment when the world comes to a complete halt and the only thing existing in the universe are those doctors words, is a life changing event. That moment can be taken many ways, but at every presentation I do there are parents who charge full speed ahead. "What more can I do?" and "What do I need to understand better?" are questions I hear every time. The importance of parents can't be stated enough; what you see from me was done because of the support I got throughout my life even before my diagnosis. As I write this I am truly thinking of hundred, if not thousands of parents I've met that would give anything for their child on the spectrum and just by doing that I think they already have given so much; the time, the willingness to learn, and making sure their child has every opportunity to grow as possible. That, in my opinion, is nothing short of being a true hero.

To the teachers: I can't imagine being a teacher; I mean, to speak to a large classroom each and every day and managing all the different personalities while somehow maintaning your own sanity is a steep effort I'm sure. Also, and I think this is a shame, on the news we never hear of the normal teacher; the one who goes that extra mile to make sure that their students are going to reach their full potential as the news will only focus on the unfortunate incidents where a teacher has made a bad choice. However, I have met the normal teacher, the one who sheds tears at my presentation because, I've heard this so much, "I wish I knew back then what I know now!" With the rates of autism/Asperger Syndrome on the rise I think every teacher will encounter at least on person in their career and I will be the first to admit that we can be a handful to handle; I know I was as I asked "why?" at least a dozen times a day as I didn't just want to know the facts but I wanted to know why it was that way. I wasn't trying to be annoying, but I just wanted to understand the whole picture. Also, I was the first to correct the teacher if she broke a rule or misstated a fact; again, I wasn't trying to undermine her position but rules are rules and facts are facts. And to be perfectly honest each teacher I had was overly patient with me and at the time I wasn't diagnosed. In fact, they always explained the rest of the story or the rest of the facts afterwards when I was still enquiring. Teachers... you have so much power in giving us on the spectrum the power to grow. I wouldn't be where I am today without the teachers I had and to each teacher that cares so much about their pupils that they will shed tears thinking back on past students and to the teachers that think outside the box to give us the best platform to flourish, well, I think that constitutes hero status.

To the therapists: Before my work at TouchPoint I had no knowledge that there was any hope for change out there but since my first time through TouchPoint's parent training program I now know the potential and it lies within the hearts of the therapists. It takes a person with a strong heart to work with children on the spectrum as the progress sometimes can be slow and the level of patience needed is great. However, day after day across the country these therapists are giving it their all to unlock the human potential for those on the autism spectrum. Working at TouchPoint I've met many of these amazing people and I know I've never said it but I see these people as some of the strongest, selfless people out there. I could write on and on about the sheer dedication it takes, and the fact that they may never know the end result of their work in 20 years, but in the end it is these selfless individuals that have chosen a difficult line of work and they give it their all to enrich the lives of those on the spectrum with growth and that, without a doubt, is a sign of a hero.

There are many more segments I could write about; the police officer who handles an autism case with grace and patience or the doctor who has a full knowledge of the autism spectrum and gives the parents a full array of options and with it the most important word of all, hope. There's one thing that ties each aspect I've mentioned together though and that is a heartfelt passion to give the person on the spectrum each and every chance to become more and to grow. As I started this out with, when I'm interviewed the interviewer wants to know about me but in all reality over in the hidden shadows in a long list of all the heroes that helped me along road in life to get to where I am now. Some know who they are, others will never know, but the where I am today would've been impossible without them. So to all that have had a profound impact, or even a small impact, in the life or lives of those on the autism spectrum I salute you, the true heroes. The world may never know the impact you have made, but for that one person you helped, in their heart, they will remember you forever.

10 comments:

  1. I agree with everything in your blogpost. Wonderful post. Aaron and all those heroes: Keep doing what you're doing!

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  2. Thank you Aaron for your continued incredible insights.

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  3. It's a great post:) I am a parent and haven't accepted my son's diagnosis yet. I might as well be honest about it. Maybe others feel the same way. I think it's because it kills me when I see him struggle to do things that my daughter did so easily. I'm still angry and I guess in time that will go away. I do think he is special in the way that he is very sensitive to others and does not like conflict at all. He's a sensitive soul, but I struggle with acceptance. I'm taking these parenting classes and thinking "am I actually doing this, and these classes are really freakin hard". Learning to parent a child with autism is like learning a new language. Thanks for letting me vent...

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    1. I can understand that parenting an autistic child can be hard. Parenting alone is hard already, let alone when it involves an autistic child. Whenever I break down, it hurts me to see my parents (especially my mother) break down along with me. But I have no idea what I would do without my parents.
      It's okay to break down once in a while. You're only human. But Autism isn't the end of the world. I have Asperger's Syndrome myself and right now I'm emotionally in a very bad place. But even now I don't feel that having Autism is the end of the world. There's always hope. Don't go and deny the Autism, but try and work on the negatives and use the positives. This way you'll see magnificent things happen. For example, Aaron probably wouldn't be able to do what he does now if he didn't have Autism. I'm not just talking about the presenting, but also about the flagging. Kansas does some amazing things with a person.
      I have a hard time finding a good job, but as a volunteer I have some high positions within some events. One of them even counts 3000 visitors, which is a lot for the small country that we are (the Netherlands). I'm sure I wouldn't be able to do what I do without my Autism either. All these days hyperfocussing on finding more and more information on how to run an event. All these events I've visited myself, because I simply love them so much. Being able to see the big picture within how masses of people move around, because I learned to shut myself out from many conversations going on around me.

      In short, yes Autism can be a hard thing to deal with and it's only normal that seeing your son struggle just breaks you down once in a while. But try and find the good things within it too and accepting it will become much easier. :) Once you start seeing the good parts too and find hope, you can show your son this too. This will help the both of you.

      By the way, it's great that you care for your son so much and that you're going through those parenting classes. It shows how involved you are. :)

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    2. Hi im wendy and my son is moderate to mils severe autistic and i always hear about asperger's syndrome what about profound autism...............no one ever talks about that......i feel i dont know what i am doing and still i also didnt wanna except my childs diagnosis still dont cause he's sooo brilliant in sooooo many other way ..i feel myself wanting to screaaaam help!!!! what kinda parent classes because no one is northeastern ohio seems to care if u get the help you need!!!!.......thanks for listenin Wendy

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    3. There will never come a time when you will NEVER be angry, NEVER want to give up and walk away. Keep at it, realize that your new reality is for keeps and try to find a way to embrace that. Make use of the resources. I don't mean just the schooling resources. I mean find groups that actually do things together, with the "kids" alone, with the parents alone (use respite care if you don't have family to cover), and with the whole family. Find a Bethesda Bible class -- I hope there is one nearby -- for your child. And do not abandon your own faith life. Go to church. Take your child with you. But remember, acceptance does NOT mean the anger is gone for good. Don't be so hard on yourself!

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    4. @Wendy
      Hey Wendy. To me it just sounds like you have a son who's autistic AND brilliant. I'd say that's an amazing combination. He's a great example of that autistic people can be absolutely brillant. :)

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    5. My son has PDD-NOS and a guesstimate IQ of 70. He will be 20 next month. He received the diagnosis at age 4. It felt like a giant science experiment. I was bitter, angry, depressed, sorrowful. I no longer feel these things so much as I do acute anxiety at times about his future once I am gone. Connor has taught me to value much more than people with autism or other overt disabilities. I look at those who are considered "odd" or "different" and appreciate that very quality. We are oh so judgmental. I am a better person because of autism. Would I have chosen it? Absolutely not. But there is grace to be learned in embracing the unfamiliar ...

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  4. Thank you so much for sharing. It brought tears to my eyes to hear that you are doing well. I hope to accept it soon. I'm not sure when, it's like a slow process..some days i feel like i've accepted it a little more. Other days I just want to yell and get really angry. But there's no one to get angry at.

    I am very grateful for your response:)It gives me hope:)

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  5. If you and your readers read my replies, I always have good intent- whether it's supporting you or giving you constructive pointers.

    As an occupational therapist who also has AS, I get the struggles that people with autism have on a personal level. That's why I am sharing my success stories over and over again to show that there is hope in a different way... some of the skills associated with "normal" people can be learned, it's just the matter of how hard people with autism choose to work on it, seek help when needed, and accept constructive criticism.

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